Rare Disease Day performance spotlights living with disabilities

“Most Likely Not To…” puts spinal muscular atrophy in a starring role

Susie Strachan avatar

by Susie Strachan |

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Multiple people, some using wheelchairs, sing together in a large open room.

Some of the cast of “Most Likely Not To” perform during a rehearsal. (Courtesy of Stephen Lodekin)

For the cast and crew of the musical comedy “Most Likely Not To…”, remembering high school moments via a trip back to their high school reunion allows them to put the spotlight on life with disabilities and the way ableism colors everyday situations.

The one-night show — performed today, on Rare Disease Day, in New York City — has all the expected elements of musical theater: relatable characters, stirring storytelling, soaring musical score, plus an added twist.

Several people, performing on a stage, are shown on a stage with the spotlight.

Cast members, including Jessy Yates (wearing green blazer), take part in the dress rehearsal for “Most Likely Not To …”

“Most Likely Not To…” is created by the spinal muscular atrophy (SMA) community and brings together a crew and cast that includes people living with SMA. The musical is part of the SMA My Way program funded by pharmaceutical company Genentech, which supports and raises awareness for the SMA community.

There are five people with SMA in the ensemble, along with an actor with a different disability and 14 able-bodied people.

Joel Manuel, a singer and actor from Chicago, who is pursuing his acting dream in Los Angeles, says people with disabilities are often portrayed as unintelligent or a burden. And they are often used as a prop to move the plot along.

“Often, when people with disabilities are shown on TV or in movies, it’s a sanitized version of who we really are,” says Manuel. “We can be irreverent; we can be jerks. We can be hilarious and just as well-rounded as anyone else. And it’s important that we’re represented that way in the media.”

Much of the world is structured for able-bodied people, so many people with a disability were struck off as “most likely not to …” in their high school yearbooks, he explains.

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‘People like me have stories worth sharing’

Seattle native Allegra Keys was involved in crafting the dialogue and overall story structure of the musical. She says being part of the writers’ room highlighted how much representation matters.

A poster for the performance "Most Likely Not To..." shows a woman holding a book over her face, while several others are shown the background, including a person waving, someone with their hand raised, a girl taking a selfie, a two musicians, one holding a guitar.

The poster for the musical “Most Likely Not To…” is shown. (Courtesy of Genentech/SMA My Way)

“To have a safe space to share my voice, and allow my experiences as a person living with spinal muscular atrophy to be heard, was something I’ve never done before,” she says. “This musical is showing that people like me have stories worth sharing with the general public. We belong in music studios and in writers’ rooms and on stages.”

“Most Likely Not To…” follows a high-powered fashion designer, played by award-winning actor/singer Shannon DeVido, as she navigates a meet-cute, an awkward 20th high school reunion, and a dodgy run-in with the airline industry while traveling cross-country with her wheelchair to her reunion.

Travel disasters were a recurring theme discussed in the writers’ room, says Keys. Her electric wheelchair was badly damaged by an airline, depriving her of independence and autonomy.

“Ask anyone who uses a mobility device about their travel stories, and they will all share the common thread of extensions of our body being treated like luggage and not customized medical and independence devices,” she says. “We have all had our chairs broken or lost when traveling by plane, but we keep flying and we keep talking about the struggle of flying to hopefully start change.”

Showcasing many common situations for people with disabilities

“Most Likely Not To…” incorporates satire and sharp wit in its dialogue while showcasing many of the situations people with disabilities find themselves in.

At the high school reunion, two of the characters realize their mutual dislike of each other was founded on stereotypes that their classmates had of people with disabilities.

“They were always grouped together because they had a disability. That high school experience was straight from the writers’ room,” explains Keys. “Nearly all of us avoided other disabled people when we were younger because we didn’t like the assumption that all disabled people had to be friends.”

Two people on stage pose for a selfie, while one holds a suitcase.

From left, Darilyn Castillo and Shannon DeVido, cast members of “Most Likely Not To …” take part in the performance’s dress rehearsal.  (Photo courtesy of Genentech/SMA My Way)

While there are plenty of dramatic moments, “Most Likely Not To…” wouldn’t be a musical without its songs. The composers have written six numbers, including the single “Take Me Back,” about how people are not the same person they were in high school, and there is a cast album.

Manuel and singer/songwriter/actor James Ian portray characters from a high school band, Three Automatic Doors Down, who perform a song called “Spaces” at the reunion.  Spaces was originally written and performed by Ian as the first project sponsored by the SMA My Way program.

“We deserve to be on stage. We deserve to be in music studios, to be writers, to be on television,” says Ian, explaining that he hopes the audience will appreciate how the music highlights his humanity, along with that of everyone living with a disability.  “We’re talented, smart, and funny. We need to tell our stories, to be heard in the mainstream.”

YouTubers Shane and Hannah Burcaw — whose channel Squirmy & Grubs documents their inter-abled love connection for their more than 1.6 million followers — wrote their own dialogue for their cameo in the show.

“We can say that we are playing our YouTube personas in the show. We’re not going to share yet what we’re doing in the play, but it’s very silly and very entertaining,” Shane Burcaw says. “Having authentic casting, with people who have SMA, is very important for a show about disability. We all gave the talents we naturally have to make this a success. I love how we’re representing all these voices who told their stories.”

As they live in Los Angeles, the couple will be using movie magic to take part in the musical.

“We’ll be appearing on a screen, the same way we would on YouTube,” Hannah Burcaw says. “I think the most touching moment will be when we see the whole show put together.”

We deserve to be on stage. We deserve to be in music studios, to be writers, to be on television. We’re talented, smart, and funny. We need to tell our stories, to be heard in the mainstream.

Creative director Adam Pryor says he’s pleased about how the SMA community stepped up to ensure the musical will resonate with the viewing audience.

“Yes, we wanted to tackle issues the SMA community deals with, but we wanted to go deeper,” says Pryor, who is also the senior manager of product public relations for Genentech. “These narratives are transferable to anyone who built their identity around how people viewed them. We wanted to show how, as you grow, you have to reckon with how people saw you in high school and how to move past it.”

“Most Likely Not To…” will be staged as a one-night performance at 6 p.m. EST today, Rare Disease Day, at The Times Center in New York City. It will also be livestreamed at the SMA My Way site.